‘Really?’
‘Yup, for a while.’
All I could think of was that earlier in the year this is what he went through himself.
A walk into town to revisit Lisa’s hangings in the Royal Albert Museum. I sat for over three quarters of an hour looking and listening as people came and went. I filled three pages with phrases and the beginnings of stanzas, and felt like a writer again.
An odd thing in the bath today. A perfect rectangle of denuded hair, in exactly the area they zapped me during radiotherapy, just to the right and centre of my tummy. How did one of the cool young Australians put it when I asked her why I didn’t have any sunburn there?
‘Let’s just say the layers of, er, that you have a few more layers, of, er, fat there, er, than elsewhere on your body.’
Monday 2 October
October already.
A typical Devon weekend, hilarious stairod rain, then sunshine, then grey clouds and winds. There are two apples left on the tree. The path up to the house is a cider-smelling orange quag where the crab apples have been trampled into the gravel.
Last Tuesday was stunning, clear blue sky, sun genuinely warm.
I remember, because I walked by the river for a little way before having to throw the towel in, exhausted. It was both exhilarating (it was too nice to be in the house) and depressing.
Today, after a grey start, is the same. But I won’t be going anywhere, except for milk.
It took watching Stephen Fry’s programme on telly, about ‘the secret life of the manic depressive’, for the penny to drop. Not that I suddenly think I’m bipolar, just that what I’m currently going through is the closest to depression I’ve had during this whole business. I didn’t get it with chemotherapy, even though I felt substantially worse; whatever it is with radiotherapy (I always want to say ‘radiation’) – it certainly seems to have flicked a switch. I wonder if this is what John Diamond meant in his book – he had radio long before chemo and said he got very depressed with it. The irony is, I’m not depressed about having cancer – they think they’ve sorted that. It’s to do with uncertainty, coupled with the fact that I’m feeling lousy but not officially being treated. It is very counter-intuitive. And nobody tells you about it. The tiredness, yes, is mentioned. But not how you feel. In a jokey email to a friend last week I said I was ‘sick and tired’ of it all, ha ha, as a general feeling of queasiness is also a daily fixture (though thankfully, so far, without any actual throwing up). But as phrases go, that pretty much sums it up. Perhaps it is worse, having had a glimpse of almost feeling normal over the summer. Another factor here is that everyone goes round saying how well I look all the time. Given that many people have said this all the way through my treatment, including the ‘waxwork’ phase of chemotherapy (© the kids), I am tempted to not believe them. But it’s true, even to myself. I have hair, colour, eyebrows. But what I want to say is ‘If only you knew.’ The line of Stephen Fry which brought this home was when he said ‘What people don’t realise is that on the outside I’m doing what I do, being witty, urbane and charming, but inside my head I’m screaming for it all to end so that I can go back to bed.’ Straight after the programme we watched the first in a new series of QI, his new quiz programme/vehicle. It made me laugh out loud. But I also felt for him, knowing what was going on underneath.
I’ve had enough of ‘Fine.’
I am done with cheerful.
This unwelcome new side of the cancer experience is even more ironic given that the last two weeks have been extremely productive. Poems have been arriving, as Raymond Carver says somewhere, every day. (Perhaps this also explains why this is my first diary-visit in a week. I seem incapable of doing both.) But, as the Stephen Fry example shows, depression does not prevent creativity in those who have it, but rather, seems to foster it. No, it’s not that I am being creative that I find ironic; it is that through these first forays into putting my experience into poetry I am only just starting to realise what I have been through and how angry I feel about it.
The latter, in particular, has been a revelation. Not that I am angry with any one or thing or experience – just angry. In the poems it comes across as surface annoyance and irritation at what people say to you and how they expect you to be. But I know underlying this – as in the proverbial iceberg analogy – is a vast hidden mass which cannot (and must not) be seen above the surface. Until now, that is.
Buried on p. 30 of yesterday’s Observer, an article by Karol Sikora, medical director of Cancer-Partners UK and formerly Professor of cancer medicine at Hammersmith.
Entitled ‘It’s time to take the politics out of cancer’ the piece hit me on several levels. (I’ll come to the politics bit in a minute.)
Firstly he gives an extremely clear explanation to the lay reader of what is going on when a patient is diagnosed:
We now understand its origins in the intricate molecular control machinery of the cell. This results in essentially a runaway cell with the accelerator on and no brakes. Slowly, the abnormal cell multiplies and spreads to other parts of the body wreaking havoc as it goes.
I wish I’d had this kind of thing to read back in February; though Felicity and Karl’s oral explanations said more or less the same thing, there’s something so transparent about this which I find bizarrely reassuring.
Secondly, he has no time for what politicians are doing for cancer sufferers as a whole. The ‘media frenzy’ over Herceptin took hold earlier this year, the Department of Health stepped in ‘without waiting for our drug regulators’ (NICE) assessment and decided that it should be available for all suitable breast cancer patients.… This is crisis management driven by political imperative.’ Taken to its extreme, as in Israel a few weeks ago, this results in the kind of behaviour from ‘lobbyists’ where they go on hunger strike until the decision to make a ‘wonder drug’ available is brought forward, irrespective of cost.
His third point is that we are now living in an age where we view cancer as a romantic disease. To make this point he refers to Susan Sontag’s Illness as a Metaphor: the Victorian poets had TB, the Eighties brought HIV/AIDS, and now we have cancer. His question is this – and it’s not a comfortable one. Knowing as we do that not all cancers are equal (he cites the example of an old man dying of prostate cancer receiving different treatment from a woman of 40 with breast cancer) is the price we put on treatment – i.e. life – determined by ‘the political importance’ of the disease, by romanticism or ‘robust analysis of [each drug’s] cost-effectiveness’? The key phrase here is ‘political importance’. Breast cancer, or, specifically, the type treatable with Herceptin, seems very ‘hot’ just now. But one day, if predictions are correct, it could be NHL. I have an interest in this, because Rituximab is just one such drug or agent on which NICE will soon be deciding to promulgate – or not. At the moment it is not cost-effective to give it to people with indolent NHL. But what if rates of diagnosis of that start to multiply (i.e. it becomes high profile) or someone famous is diagnosed with it? Is it right that they should have it, even if their chances of survival are not necessarily improved by taking it?
The radiotherapy department has just rung to ask how I am. I told them I was feeling increasingly sick and tired (ha ha) the further I went away from the treatment. But I couldn’t say I was depressed. I just couldn’t. They said to drink lots of water and to call if I needed to talk. It’s well-meant advice. But we both know I’m not going to do it.
Tuesday 3 October
A beautiful blue autumn day. Crisp morning air early on and ‘plentiful dew’ (Jaan Kaplinski).
I wonder how far sensible discussion of cancer will ever be possible in this country. For every Sikora piece there is a Darren Clarke’s wife/Kylie’s new haircut/Caron Keating biography waiting, like one of Medusa’s snakes, to take its place.
The real problem here is that it isn’t always these popular figures who are responsible for ensuring that our language seems destined to continue dealing with cancer in
a neoromanticised/idealised way, i.e. talking only of battles, fights and bravery. Last week I watched one of those ads on telly (like the current one for giving blood) which it is hard not to be moved by, by Cancer Research UK. Well shot, beautifully chosen music and graphics. The phrase they chose to leave you with? ‘Help us in the battle against cancer.’ It seems to me we should distrust this promulgation of war imagery most thoroughly. Either that, or every disease, from HIV/AIDS to the common cold, should become one. I’m not in favour of that either. I think it would lead to a permanent post-Diana-style sob-fest fetishisation of just about everything. But it might be more honest.
As one of the assassins gunned down by Matt Damon in The Bourne Identity says ‘No one tells you about the headaches.’ On top of the queasiness bracketing each day at breakfast and supper, I wake with an absolute shocker, worthy of a good night of Otter at the Hourglass. But no.
Linda Southwood came in for about three minutes yesterday afternoon and left me feeling both puddle-like and less alone. She is ten years into her own (breast) cancer remission now, but remembers the treatment like it was yesterday. ‘Chemotherapy made me feel like a princess,’ she said. ‘During radio I felt like a pork chop.’ This ought to go at the front of cancer treatment text books for medical students. I welled up across the kitchen table as she spoke: ‘I know they had their sums to do each time, so they didn’t cook me, but they could at least have asked how I was. On the last day one of them said they liked my cardie. It cut me open.’
Then she spoke intensely and briefly, about how the early stages of remission – ‘No one’s looking out for you any more’ – were much harder than the bulk of the treatment. She seems to know all about me.
Saturday 7 October
‘I don’t want to commit suicide. I just wouldn’t mind being dead.’ The Stephen Fry programme on depression still needles away at me. Not only because it sums up how I felt exactly at this time two years ago, but also because it’s a neat summary of how you feel during cancer treatment, on the worst days of chemotherapy and radiotherapy, that is. It’s made me think very hard, this latest bout of feeling low – dare I say depression? – about whether there is a connection between radiotherapy and being miserable. John Diamond, if memory serves, freely admitted to being depressed while he had his radio treatment, I wonder if there are any studies on it. In spite of their (three minute) courtesy call to check ‘how I was doing’ it’s the being left on your own to get on with it and gradually feel ‘normal’ again that I find so difficult.
What do I have? The queasiness and nausea which I get at breakfast and at 5 pm each day at last seem to be easing off. (Remember, I finished radio three weeks ago yesterday.) Touch wood etc.
The rectangle of denuded hair on my tummy looks pinker and barer by the day.
I take ages to drop off to sleep – never a problem before, even during chemo (except in the Bad News phase). And I don’t seem to sleep much beyond 5/5.30 any more. I lie there listening to Tatty breathing, feeling dreadful. The good part of this is that in this dreamy just awake state, many lines of poems seem to arrive in the half-light. The bad side is I don’t get them down fast enough, or accurately enough, before the day starts.
Monday 9 October
It’s a pretty rum state of affairs when it takes having cancer to admit that you sometimes get depressed.
We had Non for the weekend. On Friday evening Tats went out to a farewell dinner of a long-standing member of staff from school, so we watched telly with her upstairs. Somehow we got onto the Stephen Fry programmes. She’d seen one, she said, and would love to see the other. The standout line, the one all the papers quoted in their telly reviews, went something like ‘I just have this little voice in my head telling me I’m a useless cunt all the time.’
Whether or not I’ve been feeling exactly that recently I certainly did after hearing Andy read at the Picture House on Saturday, just as I did after hearing Symmons Roberts at Greenbelt. Basically, it’s game over. When you look at the variety in the use of forms, the copiousness of the vocabulary, the wit, the learning: it takes your breath away. And hearing them read, they’re as light as a feather, charming, all achieving lift-off, while remaining absolutely themselves, demure, clotted, bursting. I can’t compete. My wee poems about cancer, my ‘How To Pray for the Dying’ my ‘The Year of Drinking Water’ just pale in comparison.
In the Saturday Guardian, a moving sequence of photos from Annie Liebovitz, of Susan Sontag. I’ll admit I had forgotten that Sontag had died of cancer. There’s one shot of her actually receiving chemotherapy – through what looks like a hickman line in her chest. Her eyes are fixed sideways onto the nurse bending in towards her. She’s smiling, but not conventionally beaming. It’s rueful, accepting, but determined as well. It made me well up as I came across it. She captures exactly that moment of ‘fighting the good fight’, of defiance mixed in with vulnerability.
Talking with Tats on the weekend I came across another analogy for radiotherapy: Ofsted inspections. They are relatively short (now) and mechanically painless experiences – but the side effects are long lasting and take ages to fully leave the system. As I watch Tatty go through the motions of hoop-jumping each weekday night – just to stand still – I know that we’re both enduring the same kind of aftershock.
We’ve entered a new era with the kids. Shimi came down to breakfast one morning last week, turned off the Today programme, and asked if I could find him Radio 1. It was the Chris Moyles Show: ten minutes of meaningless banter followed by the Scissor Sisters. I made their packed lunches through gritted teeth.
Friday 13 October
Poems have been arriving each day all week. But still my spirits do not lift. Bumped into Maura and Spencer yesterday on errands in town and it was everything I could do not to crack open like an egg on the pavement. We went for coffee and gossiped about losing weight and university politics. Felt done in. Went across the road to the Oxfam bookshop and treated myself to books I don’t need (e.g. a 1991 copy of Poetry Review about American poetry). Also bought (in Waterstones) the new PR issue – my first for five or so years. It looks good. And that Jane Kenyon Selected which Bloodaxe have brought out. That looks good too. Spending money I don’t have.
Tats came home teary last night and Wednesday too. It just reminded me that I felt the same. Did my best to console her, certain I did a poor job. Lay in bed last night talking to the ceiling about how hard it’s been post-radio. Someone said to me in the street yesterday ‘It [i.e. radio] made my dad depressed too.’ So perhaps this is what I should feel.
This morning Sally appeared with a huge bunch of lilies and some hot smoked salmon from the deli to say they were thinking of us. ‘What with Lisa being so poorly and everything everyone’s taken their eye off you for a bit. We want you to know that we know you’re not out of the woods yet.’
Felt like cracking open then, too.
I don’t know what is stopping me going for counselling. I’ll go and pick up the phone now.
Tuesday 16 October
What is it like being told you are in remission from cancer? As when you are diagnosed, it takes a while to sink in. You’re not sure you heard it right. You want to drive back to the hospital and say ‘Are you sure? That it’s me?’
It’s a day not unlike the one eight months and two days ago, when I was first diagnosed. You put the phone down, say ‘oh’ to yourself and go back to trying to read the paper. You feel a little flat, rather than shell-shocked, in despair. News of remission’s much the same. Outside it is raining. As on the day of diagnosis, there is a child at home, watching telly, only this time off school with a cold. You don’t feel like punching the air. You maybe do cry a little, but only when you tell people, and they start crying, on the phone. It’s a normal day. You feel a little numb. You think, Did I really come through this? Was it real? It’s still as though it’s happening to another person.
It’s the news you’ve longed for, but, you think, maybe I should just check
my email.
It’s a very grey day.
Tatty and I waited for an hour before Felicity saw us at 11.45. She asked after me, beaming her lovely smile as always.
I explained about the tiredness and she asked if Perry had told me to expect it. I told her he had, but that I’d hoped it would be over by now.
In truth it was I who used the word first. ‘I was hoping that it might be easing off now, as I edge remission.’
‘You’re not edging into it. You’re in remission.’ She smiled.
‘Really?’
‘Yes, as far as we’re concerned, unless you show signs of the disease coming back, you’re better. That’s it.’
‘Wow. Great. Wow.’
She said they’d scan me in November, as expected, and that, for the first year at any rate, they would see me in clinic every three months. ‘But we won’t scan you each time. I don’t think we’ll need to. We don’t want to overdo it.’
She examined me very briefly, for lumps.
As I put my shirt back on I told her I’d been feeling a little flat recently. I couldn’t bring myself to use the word ‘depressed’. Felicity had no qualms. ‘Well, we can always get your GP to prescribe some sleeping tablets or a mild anti-depressant.’
Love for Now Page 24
